Monday, March 7, 2011

Cystic Fibrosis Loneliness

Cystic Fibrosis is a very lonely disease. Up until a couple of months ago, I only knew a few people who have it. They used to have camps that CF patients could go to where you could meet other kids going through the same thing and enjoy each other's company. I never got the chance to experience one of those camps, because they got rid of them before I was even diagnosed. Why? Due to our thicker, stickier mucus, people with CF are much more likely to get "bugs" or bacteria growing in the lungs. Those bugs can make anyone sick, but to a CFer, they can be deadly. Doctors decided that CF camps were too risky, because if one person had a bad bacteria, it could spread like wildfire, making a lot of people sick.

If you are a Grey's Anatomy fan, you might have seen the episode a few weeks ago that touched on this subject. Long story short, two CF patients were at the hospital. The man was there for a lung transplant. When the doctors found out that the girlfriend had Cystic Fibrosis as well, they told him they had to break up, or he could not have the lungs. That episode has been a huge topic of discussion around the CF community. I won't go into all the points put forth, but I will say that it was very unrealistic. First of all, lung transplants are major procedures, and they make sure you have a major support system before you can even be put on the list. There is no way a transplant doctor would make the guy's only supporter leave right before the surgery. Second, I don't believe that anyone can give you an ultimatum like that... doctor or not. I'm interested in what you all think about the subject. If you have anything to add, please leave a comment!


  1. I have never been to cf camp either. I have always heard about them and I understand the risks but it still sucks that they are gone. For most of my life the only other person I have known with cf is my brother. He has met other cfer more b/c he would go in the hospital more, but even then he only met a handful. When we became adults he moved closer to the Stanislos Hospital in California for his lung transplant. He is always telling me to move down there b/c of the cf community and support. Where I am in CA I don't know anyone with cf all the community I have is on the internet. Well other than my family living here with me. I do know about CFRI and that sounds really cool, I just wish that there was more or that I knew about more. I haven't seen that Grey's episoed you where talking, but that sound like hollywood drama to me. I was and am able to visit my brother after his transplant and I haven't had one.

  2. It made "better" TV drama. . .end of story. I have a transplant and I can go around my CF friends. Obvious caution is used of course. Being together would be complicated, but I agree. .in the real world no doctor could make that call. I personally know of CFers who fell in love and married. . . Doctors can only interfere with your health not your personal choice of who you love.

  3. I definitely agree with your about the Grey's Anatomy episode. Being a CF patient and a transplant receipient, it was definitely unrealistic. I think that the risk factor is about the same as a normal person marrying someone with CF who gets a transplant. The transplant receipient is just as susceptible to catching colds, etc., from a "normal-non CF" person. But that's just my opinion.

    I never got to do the CF Camps either. However, when i started going in the hospital, we didn't have many rules/restrictions/infection control as our centers do now. We were able to form a huge support system of friends, hang out with each other all the time, etc. I was blessed to have that support, but also blessed that I didn't catch any other CF bugs, such as B Cepacia like some others did. I know our pediatric center now doesn't even allow the CF patients to leave their room. I think I would have gone crazy if that rule was in place when i was at our pediatric center.

    Anywhoo...I noticed you have been following my blog and have me on your blog roll. I've been so crazy busy I am just now getting around to my new followers. So I've added you to my blog roll as well. Thank you and I look forward to keeping up with you!

  4. Thank you all for your opinions! I totally agree with what all of you said especially since you guys have a lot more experience with lung transplants than I do!

  5. I have no expertise or even basic knowledge about this, other than what you have said. But, Dan and I both thought that it wasn't very likely.